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Does anyone have chondrosarcoma?
Sarcoma | Last Active: Jun 24 7:09am | Replies (25)Comment receiving replies
I have 5 secondary dedifferentiated chondrsacoma tumours in my right humorous and left thigh/hip. Primary in tight femur removed by surgery. I have the IDH1 gene mutation and am on a clinical trial of a drug called Tibsovo. It is too early to know if it is working or not. It is usually used for leukaemia.
Replies to "I have 5 secondary dedifferentiated chondrsacoma tumours in my right humorous and left thigh/hip. Primary in..."
Hi there, I read your story and my husband to has chondrosarcoma in his right tibia and fibia. He has underwent I believe 5 surgeries now and even having a full knee replacement and still it has returned for the 3rd time now, he refuses to amputate his leg where the tumor is growing and after having an open biopsy to try to get as much out, since they state it's in an inoperable area it doubled the size in a little over a month and he now has had this active cancer since June and here it's January now, he's taking the same trial drug as you are, do you know if yours is currently helping or not?
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How are you feeling ? Is the med helping?